I sit here waiting until I have to go to work, hoping that everything will just vanish from my mind so I can focus while there. But there's been a couple interesting things that have popped into my head knowing what my son might have.
Why don't they educate people more on retinoblastoma and Coats' Disease?
I've done a lot of research, and seen that most people don't know about these things until they are farther along. It's left to the pediatrician to notice when there's something wrong, but how often do you really go to the pediatrician? Not many times, honestly. Sure during the first month of life you go very frequently, but after that it slowly dwindles. So what if the retinoblastoma ended up being an aggressive form of cancer?
I seriously think this is something that more parents need to know about rather than just stumbling upon it. As we have gone through pictures, we think that this might have started about 2-3 months ago, and I wonder if we had known then maybe it would be better. Sure we don't know exactly what's going on yet, we don't know if it's cancer or not, but maybe we could already be on the road to recovery by this point. Maybe we wouldn't be sitting here with a 5 month old wondering how far it's gotten, or how bad it is. We need to be educated!
I've kind of turned into a spokesperson for my birth board on a website for this. Telling the women with babies close to mine that they need to check their photos! You never know, and looking at it now; I completely see what's going on. But I didn't at the time. It was like I could subconsciously notice it was weird, but consciously I never really thought about it. It was just another "thing."
Even though we're going through all of this, he's still an extremely happy baby. Snuggling up with mommy, and making all sorts of noise. So far it doesn't seem that any of this has impacted his development, whatever it is. But it still makes me wonder;
What if we had known sooner? Would it have made a difference?